One week ago, May 22nd and 23rd, several Lyme fighters and Lyme Disease supporters gathered at the headquarters of the IDSA in Arlington, VA for the fourth annual Mayday Project protest. Those of us not able to attend the protest in-person were able to participate by faxing, emailing and using social media to deliver a 24 page document to the IDSA suggesting that they redefine the guidelines for the diagnosis and treatment of Lyme Disease. To see the document in it’s entirety, click here.
Our mission was to persuade the IDSA to “accept persistent Lyme disease as a diagnosis” (The Mayday Project, facebook.com, 23 May 2014. Web. 23 May 2014).
The Mayday Project further states “This will open the door for people to do research into the chronic form of the disease and hopefully produce a cure. This is what we ultimately want” (facebook.com, 23 May 2014. Web. 23 May 2014).
Fox 5 DC came to cover the event and has since produced two great segments on the devastating effects of chronic Lyme Disease and the controversial methods of transmission for this illness. Please click on the following links below to watch the videos.
I am so grateful to The Mayday Project, the people who attended this year’s protest and to those who helped to advance the cause of Lyme Disease (many while seriously ill) by contacting the IDSA through various forms of communication. It’s seems our voices are beginning to be heard and I hope and pray that our illness will finally be recognized and patient’s will have faster, better access to appropriate medical care. Perhaps next year I will be in better health and able to participate in the protests in-person. Between the local and national protests, this year’s Lyme Disease Awareness Month was a great success.
Fighting Chronic Lyme Disease can be daunting. I will admit to feeling weary and overburdened by the struggle on at least a few (okay maybe more like several) occasions. I try to be strong, but sometimes, tears are shed and I temporarily feel a sense of defeat.
A recent conversation with a friend challenged me to think of the opposite of defeat. Instead of allowing my thoughts to drift toward a place of darkness and pessimism, could I begin to cultivate an overcoming mindset in spite of my decade long journey with a chronic illness? Let me be completely honest with you. This battle has been nothing short of grueling for me and I have not always handled it so gracefully. At times, I need soul-grabbing inspiration to even force myself out of bed some mornings.
I began to flash back to several of the patients I had seen in my career as an Occupational Therapist. Some exhibited striking emotional and physical resilience, overcoming unimaginable obstacles. Regardless of the troubles that may have greatly distressed them, they were able to rise to the challenge of their circumstances over and over again. These unique people had a perception about life and adversity that enabled them to conquer weariness and repeatedly maintain a prevailing state of mind.
I believe there are lessons I can learn from these extraordinary individuals that have been placed in my life over the years. Rather than allowing myself to deviate toward the negative, I think it is possible for me to further develop an overcoming attitude as I walk through whatever situation lies before me by being mindful of the following 4 principles.
1. Rather than being lifted out of a situation or going around it, overcomers accept that they often must continue to walk through it.
I have noticed something about those I admire the most. They’re honest and realistic about the uncertainties that are before them. They know that not every journey will be easy. There may even be times when the question arises, “Why did this happen to me?” but they do not dwell in this place very long. They see an opportunity for personal growth in their difficulties and are willing to take that risk. A dear friend of mine, who has been battling an obscure illness, remarked to me, “I never knew there was such strength within me. I would not have known this had I not gone through this experience.” Is it possible that going through difficulty may in fact yield a positive change in me? I aim to remain open to this point of view.
2. They maintain the belief that there will be better days ahead.
During seasons of my chronic illness, I have felt confused and angry at the drastic changes that have occurred in my life. I am now learning that overcomers give themselves permission to redefine their identity in spite of the struggles they may be having. They see light in a direction where others may see darkness. As I absorb this idea into the very deepest part of me, I find myself thinking, “Although I am now different than I was before, I know that better days still await me.” It’s a relief to me to know that an alteration in my life doesn’t have to equate to the end of my future.
3. They focus on what they have, rather than what they are lacking, and ways they can share what they have with others.
I have spent countless amounts of energy recalling what I used to do or reminding myself of what I had in my pre-illness life. These comparisons generally lead to a sense of loss and frustration. In contrast, people with an overcoming mindset choose to focus on the positive aspects of their lives. By maintaining their attention on what they do have, they can often find new and creative ways to share their gifts and talents with the world. I find that as I begin to implement these principles, I am discovering more peace within my current situation and unique moments to share my story with others.
And now, the most important attribute of all.
4. They are committed to finishing their goals.
An overcomer sees obstacles in his or her life and chooses to persevere and press onward. Many of us can start something, a new project, a new business, the pursuit of better health, etc. However, not all of us have the ability to finish what we have started. Some of us lack endurance for the ups and downs of the journey and give up before our objectives have been attained. Call it cock-eyed optimism, foolishness or sheer faith, an overcomer can see even the slightest improvements as advancement and uses that momentum to continue in pursuit of the goals they have set for themselves.
Although we may find ourselves in unexpected situations at times, cultivating an overcoming mindset can make all the difference in our lives. It will allow us to discover hope, beauty and life even in the midst of our darkest days and celebrate the milestones during the better times. Instead of being defeated by the seemingly impossible nature of our circumstance, we can actually emerge strengthened, transformed and with the ability to celebrate the smallest victories.
May is Lyme Disease Awareness month. Today, May 16th, on a rainy and unseasonably cold day in Chicago, along with some of my fellow Lyme fighters, I went downtown for a peaceful protest in front of the Illinois State Medical Society Headquarters on the first day of a two-day event.
My friend in Lyme, Jenny, (yes, there were two of us) met me and brought me a lime green t-shirt to wear, with “Team Jenny” written on the back. She and much of her family, spent the last few days preparing signs and t-shirts. The event organizers assembled tote bags filled with Continue reading
When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family. I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious. The truth however is that recovery is very tricky, with lots of twists and turns along the way. There is much trial and error involved in finding a treatment strategy that will yield even slight improvements. I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is. After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like. With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you. So here ya go. The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.
1. I am still homebound more than 75% of the time.
Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks. I am not a partaker in the selfie craze and don’t post sick picks. Believe me! Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.
2. I am still very isolated by this illness
As you can imagine, since I am primarily homebound, the majority of my time is still spent alone. Only on a rare occasion will I feel well enough to see someone in-person. I don’t say this to invoke pity but rather to encourage those who may know someone who is chronically ill to reach out to them from time to time. It does not require much. Just let them know they are still cared for and not forgotten.
3. I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.
Most of the time there is not. The days I feel bad still outweigh the days I feel good. Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.
4. I often have to give myself a pep talk just to get out of the house.
Fatigue, pain, a burning brain and spinal cord are constantly present. Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there. These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.
5. You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.
Oddly enough, some of my best pics were taken on the worst days. This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed “postable.” If you saw the other 24, you probably could guess I wasn’t feeling well that day.
6 The road to recovery is actually quite bumpy.
There is no one-size fits all approach to treatment. Some use IV antibiotics. Others take oral antibiotics. Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials. Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path. Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short. This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur. The very treatments that aim to make us well can, for a period, make us feel much sicker.
7. Bizarre symptoms pop up almost daily.
When my brain starts burning, that’s weird. When my facial muscle starts twitching, that’s annoyingly strange. When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre. The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms. Be glad I do not post those on Facebook. You would not be able to keep up with them!
8. Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.
Yes, you read that correctly. I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years. Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it. This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing. 43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.
9. Despite me being ill, my husband is still as lucky to have me as I am to have him.
In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.” Yes, those statements are true, however I am not less of a person because I am ill. I still have the same heart, interests, sense of humor, etc. We still spend hours supporting one another and making each other laugh to the point of tears. My husband does not look at me and see a sick person. He sees me and notices that my uniqueness has not disappeared.
Well, there you have it. The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like. You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over. The very essence of having a chronic illness is that it is invariably, going to recur again and again. Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery. I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.
Today, May 1st, kicks off Lyme Disease Awareness Month. I will be tweeting a new fact about this disabling illness everyday in an attempt to educate the public and the medical profession about the devastating effects of this disease. I hope you will join me in my efforts. Let’s make May, 2014 the most successful Lyme Disease Awareness Month in our country to date!
1. Lyme Disease is “The Great Imitator,” mimicking over 300 diseases like ALS, MS, Parkinson’s, Alzheimer’s and Rheumatoid Arthritis.
2. Lyme Disease is named after Lyme, Connecticut, the town in which it was first discovered.
3. The first known cases of this disease occurred in 1975 amongst a group of children and adults in Lyme, CT.
4. The first Lyme Disease sufferers displayed unusual arthritic symptoms.
5. In 1982, Borrelia Burdorferi, the bacteria that causes Lyme Disease, was discovered.
6. In 1982, The Arthritis Foundation developed the first brochure on Lyme Disease.
7. Federal funding became available for Lyme Disease research, education and surveillance in 1991. I am unable to locate figures of this initial funding, but I was able to track down some statistics for the current year. According to PLOS, a peer-reviewed, open-access medical journal, Lyme Disease is 6 times more prevalent than AIDS in US. For 2014, the federal government has budgeted $23.2 billion for domestics AIDS research, education and programs. For Lyme Disease treatment, prevention and education, the government has budgeted a paltry sum of $9 million. Yes, $9 million to an epidemic that is 6 times more common than AIDS.
8. From 1998-2001, an attempt was made to make a Lyme Disease vaccine.
9. Lyme Disease is the most common tick borne illness in the Northern Hemisphere.
10. In 2013, the CDC released a statistic stating 300,000 people are diagnosed with Lyme Disease each year in the United States. That was 10 times the amount of people than the CDC had previously reported.
11. Pets can also contract Lyme Disease. A unique characteristic about this illness in dogs is that symptoms don’t start to appear until 2-5 months after the initial infectious bite.
12. Lyme Disease is most often contracted in the months of May through August.
13. Lyme Disease cases have been reported in all 50 states.
14. Lyme Disease has been reported on every continent in the world except Antarctica.
15. 25% of reported cases of Lyme Disease occur in children.
16. Typically, Lyme Disease is transmitted through a bite of an infected dear tick.
17. Most ticks carry multiple disease-causing pathogens called co-infections.
18. A single tick can host up to 30 different pathogens such as Bartonella, Babesia and Mycoplasma.
19. Ticks as small as a poppy seed can deliver a bite that goes undetected.
20. Some mosquitos, flies, mites, fleas rabbits, rodents and birds have also been found to carry the Lyme Disease bacteria.
21. Less than 50% of infected people exhibit the classic bullseye rash.
22. The acute stages of the infection may present as flu-like symptoms. However, many people will remain symptom free for a time, but can develop Lyme symptoms months, years or decades later.
23. The spiral-shaped Lyme bacteria is hard to detect and hard to kill.
24. Health insurance often does not cover treatment for Chronic Lyme Disease sufferers.
25. The medical community is in opposition over diagnosis and treatment guidelines for Lyme Disease.
26. The most common methods of testing for Lyme Disease are the ELISA and the Standard Western Blot Tests.
27. The ELISA and the Standard Western Blot tests are often not sensitive enough to detect Lyme Disease.
28. Improved testing does exist through labs IgeneX and Fry, but patients are often left to self navigate getting these tests done.
29. The current treatment guidelines suggest that a 2-4 week course of antibiotics should be sufficient to “cure” Lyme Disease.
30. The current guidelines do not take into account duration of time one has had the illness, involvement of co-infections or that the Lyme bacteria can evade detection by the antibiotics and remain undetected from the immune system.
31. If you suspect you may have Lyme Disease, An LLMD, (Lyme Literate Medical Doctor) is specially trained in the diagnosis and treatment of Lyme Disease.